StemCell Therapy

The first time Maimah Karmo attended the San Antonio Breast Cancer Symposium, she felt out of place.

Karmo was in awe of the breadth of expertise at the conference, which is one of the largest annual gatherings of breast cancer specialists and researchers. A breast cancer survivor herself, Karmo had been involved in advocacy for years as the founder and CEO of the Tigerlily Foundation, a national nonprofit that educates and supports younger women who are affected by the disease.

As she walked around the Henry B. Gonzlez Convention Center then, Karmo recognized the importance of the work around her, but she was struck by the dearth of black women like her. She knew that as a group, black women were about 40 percent more likely to die from breast cancer than white women, so their absence was notable.

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I felt so overwhelmed. Im like, theyre doctors, theyre researchers, theyre smarter than me. I didnt want to talk. I didnt know what to say, Karmo said of her first experience with the symposium. And then over time I go, Wait, I belong here. Im the one theyre talking about. So why arent there more of me at the table?

After last years conference, Karmo decided shed had enough. It was time, she believed, for the voices of black women living with breast cancer to get higher priority. On Tuesday morning, as the international conference got underway at the convention center, Karmo was instead at a dining room at the Menger Hotel, where she was leading a series of presentations and panels on the disparities in treatment and outcomes for black women with metastatic, or late-stage, breast cancer.

Throughout the morning, a series of speakers highlighted the numerous barriers that black women face when it comes to breast cancer, from accessing preventative health care to participating in clinical trials. Those problems, Karmo told those gathered, have been exacerbated by the black communitys distrust of a medical system that has historically mistreated and experimented on black people.

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Shawn Johnson, a student at Harvard Medical School, drove that point home when he recounted the history of the Tuskegee study, during which researchers withheld treatment for black men with syphilis so they could observe the sexually transmitted diseases effect on the body. The participants, he said, were not told about the purpose of the research and were not offered penicillin, which became the standard treatment for the illness about 15 years into the four-decade-long study.

We cant forget how we got here, he said.

Johnson also noted the way in which black women have been excluded from breast cancer clinical trials, which play a key role in advancing treatment of the disease and provide those who have already been diagnosed with earlier access to promising treatments. He called up information from one clinical trial that included about 4,000 people, only 20 of whom were black women.

Its important that we begin to speak up, said Nikia Hammonds-Blakely, an advocate and public speaker who was first diagnosed with breast cancer at age 16. Because it really informs the work.

Hammonds-Blakely said some women may also be unable to access preventative care like mammograms due to economic barriers, such as a lack of access to transportation.

Dr. Tatiana Prowell, an associate professor of oncology with Johns Hopkins Medicine who also serves as a medical officer and breast cancer scientific liaison to the Food and Drug Administration, said its time to rethink the way clinical trials are conducted. Studies would be more inclusive if the medical system took steps to reconsider criteria for eligibility and decentralized some of the ongoing testing and scans to take unnecessary burdens off patients.

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Dr. Lori Wilson, a cancer surgeon affiliated with Howard University, said she has been diagnosed with three different types of breast cancer since 2013. She learned her cancer had become metastatic earlier this year.

The thing to know is that we need to make sure that we understand that theres still gaps in survival, that even though weve done so much, we have come so far, there is a difference between breast cancer in white women and black women and that we need more research to know why, Wilson said.

Lauren Caruba covers health care and medicine in the San Antonio and Bexar County area. Read her on our free site, mySA.com, and on our subscriber site, ExpressNews.com. | lcaruba@express-news.net | Twitter: @LaurenCaruba

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I belong here: Advocate works to raise profile of black women with breast cancer - San Antonio Express-News

This entry was posted on December 11, 2019 at 10:44 am and is filed under Preventative Medicine. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |